Forum, Fall 2012
15
Andrew Lotz:
My Personal Journey, Continued
cream (PUVA) has stabilized the patches, which aren’t
spreading. I continue with high-dose Targretin (seven pills
daily) for maintenance and use a nitrogen mustard ointment
called Mustargen.
Thanks to care providers and the Cutaneous Lymphoma
Foundation, I have optimism and a sense of community. I felt
out of place initially as the youngest person at my first Patient
Educational Forum in October 2010, though it helped to hear
patients in their 60s and 70s speak of living with our disease.
The foundation’s next Pittsburgh forum a year later was less
jarring. I knew some participants and was more accepting.
What I accept is that honesty beats self-pity, and that putting
one foot in front of the other is the only way through any
rough journey. When you’re in it, you just do it. Resilience
displaces regret because it must.
one, no matter how challenging the events would turn out to be.
Her skin required frequent dressing, disinfecting, and bandaging
of open areas that were particularly severe on the soles of her feet
and the palms of her hands. She had a collection of white cotton
gloves that I would pick up at a local drugstore. These gloves
were a salvation for her scarred and painful hands. In addition,
she suffered from hypothermia, and a hot water bottle and a
heavy robe kept her relatively comfortable. It was a battle against
the elements; she had compromised skin that could not protect
her. Eventually, another bout of infection landed her in the
hospital with severe swelling of the legs. I was overwhelmed and
didn’t know where and how to begin taking care of her properly,
but I discovered that I was capable of more than I could ever
imagine. Her swollen leaky legs required having to wrap them in
gauze after smearing them with special ointments and swabs that
are used in burn units. My mother came to the conclusion that I
should have been a surgeon. She would not permit anyone but
me to take care of her legs.
No Regrets
My mother has been gone for almost two years now. I have no
regrets as her caregiver. At the end, we knew her quality of life
was severely affected and we respected her wishes to keep her
as comfortable as possible and out of pain. I can vividly see in
my mind the image of my mother wrapped from head to toe in
a thick blanket. At the hospital, they always had a heater and an
extra blanket waiting for her.
I learned many lessons as my mother’s primary caregiver.
Although I lost many days and hours of work along the way,
being a caregiver taught me to value life and not take anything
for granted. Also, I shared memories and dreams with my
mother that under normal circumstances would have gone
unnoticed. These are precious to me. I encourage all caregivers
to take advantage of the Cutaneous Lymphoma Foundation
and keep up to date with the latest in skin care, treatments and
support groups. Remember that there is always hope and help.
Francesca Giancotti:
My Personal Journey, Continued
EORTC -
Continued
skin disease, like psoriasis, eczema, and others. Many patients
can attest to living through this kind of frustration in getting a
diagnosis. These various studies are looking to see if microRNA
profiling can discriminate cutaneous lymphoma from benign
disease like psoriasis which will help in determining a definitive
diagnosis earlier and more accurately. There is much more study
needed in this area, but knowing that studies are being done to
determine ways to diagnose this tricky disease is encouraging.
Hopefully in the future, this will help new patients get an earlier
and faster diagnosis of cutaneous lymphoma so they can be treated
appropriately.
To read more about the presentations, the abstract from the
meeting is available on our News page at
.
Although much of the science is a bit daunting to understand by
the lay person, it is exciting to see how much research is actually
being done in the area of cutaneous lymphoma.
Facing serious challenges together brought us closer. It’s my
journey too.
Andrew, a political scientist, had relocated first to the
University of Pittsburgh, where the Department of
Biostatistics in the Graduate School of Public Health also
turned out to be a good fit for my doctoral studies. Though
academic careers and personal lives earlier affected our
amount of “sibling time,” that has changed. We see each other
once or twice a week, which I appreciate while my husband is
in Africa with the Army National Guard.
Andrew and I also run together. We were on cross-country
teams in high school and now are training for the Pittsburgh
Marathon in May, when he’ll run a half-marathon. I did the
full route in 2010 and have registered again.
Useful Foundation Forum
Last October, I accompanied my brother to one of the
Foundation’s Patient Educational Forums, presented with the
University of Pittsburgh Medical Center. I met his doctors,
took notes during presentations and participated in the
question-and-answer session.
In addition to providing support, I wanted to know more
and to get accurate information that could help me serve as
Andrew’s patient advocate. He knows I’m forceful, so we’re a
strong team.
As it turned out, I’m making another contribution. One
doctor mentioned at the forum that she wanted to do a data-
driven study but couldn’t get a grant and needed a statistician,
so I went up afterward and volunteered to help with the
research. It’s a way to give back, something I can do.
Through all of this, Andrew has been so positive and
inspiring. I actually get support from his optimistic attitude,
so it’ a two-way partnership. We count on each other.
Meredith Wallace:
A Caregiver’s Story, Continued
